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Aims: The purpose of this study was to assess the reliability and responsiveness to hip surgery of a four-point modified Care and Comfort Hypertonicity Questionnaire (mCCHQ) scoring tool in children with cerebral palsy (CP) in Gross Motor Function Classification System (GMFCS) levels IV and V. Methods: This was a population-based cohort study in children with CP from a national surveillance programme. Reliability was assessed from 20 caregivers who completed the mCCHQ questionnaire on two occasions three weeks apart. Test-retest reliability of the mCCHQ was calculated, and responsiveness before and after surgery for a displaced hip was evaluated in a cohort of children. Results: Test-retest reliability for the overall mCCHQ score was good (intraclass correlation coefficient 0.78), and no dimension demonstrated poor reliability. The surgical intervention cohort comprised ten children who had preoperative and postoperative mCCHQ scores at a minimum of six months postoperatively. The mCCHQ tool demonstrated a significant improvement in overall score from preoperative assessment to six-month postoperative follow-up assessment (p < 0.001). Conclusion: The mCCHQ demonstrated responsiveness to intervention and good test-retest reliability. The mCCHQ is proposed as an outcome tool for use within a national surveillance programme for children with CP.
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Objective: The COVID-19 pandemic led to a dramatic decrease in face-to-face teaching. This can particularly impact medical students' skills development. This prompted development of an in-person surgical skills course as guided by the General Medical Council "Outcomes for Graduates" facilitated by tutors with surgical experience. This study aimed to primarily assess participant confidence in surgical skills following the course. Design: This was an interventional study assessing both qualitative and quantitative data collected prior to, during, and post course completion. Data were collected from students via online forms, which included a mixture of "Yes/No" responses, self-assessed confidence levels via Likert scales, and free type questions. Setting: The study assessed feedback for a 5-session surgical skills course delivered at the authors' institution. This is a newly designed course using low-cost materials which was free for all attendees. Participants: Participants were all in the first or second year of medical school. There was capacity for 60 students, and all attendees provided informed consent to participate. Results: A total of 446 students applied for the course with 58 participants in the final study, 31% of whom had prior surgical skills experience. There was a statistically significant increase in student confidence levels following the course for all taught surgical skills (Pâ¯=â¯.0001). Participants were also more confident that they possessed the skills required for clinical placements (Pâ¯=â¯.0001) and to work as a junior doctor (Pâ¯=â¯.01). Thematic qualitative analysis revealed a reliance on third parties for previous surgical experience; this course improved knowledge and skills for future practice. Limitations included session duration and equipment choice. Conclusion: This study demonstrates high demand and student satisfaction from this course, offering a potential framework to improve undergraduate surgical skills teaching. The results presented here have the potential to inform wider curricula development across medical schools in the future. Competencies: Medical knowledge; practice-based learning and Improvement.
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AIMS: The Uppföljningsprogram för cerebral pares (CPUP) Hip Score distinguishes between children with cerebral palsy (CP) at different levels of risk for displacement of the hip. The score was constructed using data from Swedish children with CP, but has not been confirmed in any other population. The aim of this study was to determine the calibration and discriminatory accuracy of this score in children with CP in Scotland. METHODS: This was a total population-based study of children registered with the Cerebral Palsy Integrated Pathway Scotland. Displacement of the hip was defined as a migration percentage (MP) of > 40%. Inclusion criteria were children in Gross Motor Function Classification System (GMFCS) levels III to V. The calibration slope was estimated and Kaplan-Meier curves produced for five strata of CPUP scores to compare the observed with the predicted risk of displacement of the hip at five years. For discriminatory accuracy, the time-dependent area under the receiver operating characteristic curve (AUC) was estimated. In order to analyze differences in the performance of the score between cohorts, score weights, and subsequently the AUC, were re-estimated using the variables of the original score: the child's age at the first examination, GMFCS level, head shaft angle, and MP of the worst hip in a logistic regression with imputation of outcomes for those with incomplete follow-up. RESULTS: The discriminatory accuracy of the score in the new population of 367 children was high (AUC 0.78 (95% confidence interval (CI) 0.71 to 0.86)). The calibration of the score was insufficient (slope 0.48 (95% CI 0.31 to 0.65)), and the absolute risks of displacement of the hip in this population were overestimated. The AUC increased with re-estimated weights (0.85 (95% CI 0.79 to 0.91)). CONCLUSION: The CPUP Hip Score had a high ability to discriminate between children at different levels of risk for displacement of the hip. The score overestimated the absolute risks of displacement in this population, which may have resulted from differences in the way children were initially registered in the two programmes. The results are promising, but the score weights may need re-estimation before its clinical application in Scotland. Cite this article: Bone Joint J 2022;104-B(5):640-644.
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Parálisis Cerebral , Luxación de la Cadera , Parálisis Cerebral/complicaciones , Parálisis Cerebral/diagnóstico , Niño , Luxación de la Cadera/diagnóstico por imagen , Luxación de la Cadera/etiología , Humanos , Modelos Logísticos , Radiografía , Suecia/epidemiologíaRESUMEN
PURPOSE: To describe leisure time physical activity in children and young people with cerebral palsy and identify barriers and facilitators to participation. METHODS: Leisure time physical activity participation was derived from a national cerebral palsy register and associated factors were analyzed. Barriers and facilitators to participation were investigated through a survey. RESULTS: Leisure time physical activity participation was recorded. Outcomes of participation decreased with increasing Gross Motor Function Classification System level. Leisure time physical activity "not in club" for 11- to 18-year-olds was significantly lower than for those aged 5 to 10 years for Gross Motor Function Classification System level II. The survey supported that disability and disliking help were common barriers and parental encouragement and enjoyment were common facilitators. CONCLUSIONS: Data from the register and survey provide insight into factors influencing leisure time physical activity participation in young people with cerebral palsy and how to increase.
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Parálisis Cerebral , Adolescente , Parálisis Cerebral/rehabilitación , Niño , Preescolar , Ejercicio Físico , Humanos , Actividades Recreativas , Actividad Motora , Encuestas y CuestionariosRESUMEN
AIMS: The migration percentage (MP) is one criterion used for surgery in dislocated or displaced hips in children with cerebral palsy (CP). The MP at which a displaced hip can no longer return to normal is unclear. The aim of this paper was to identify the point of no return of the MP through a large population-based study. METHODS: All children registered on the Cerebral Palsy Integrated Pathway Scotland surveillance programme undergo regular pelvic radiographs. Any child who had a MP measuring over 35% since the programme's inception in 2013, in at least one hip and at one timepoint, was identified. The national radiography database was then interrogated to identify all pelvic radiographs for each of these children from birth through to the date of analysis. A minimum of a further two available radiographs following the initial measurement of MP ≥ 35% was required for inclusion. RESULTS: A total of 239 children (346 hips) were identified as suitable for analysis at a mean of 6.5 years (2.0 to 14.8) follow-up. In all, 1,485 radiographs taken both prior to and after a hip had a MP ≥ 35% were examined and the MP measured to identify any progression of displacement. Interrogation of the data identified that hips with a MP up to 46% returned to a MP below 40% without intervention, and all hips with a MP equal to or greater than 46% displaced further and the MP did not return to the normal range. Statistical analysis showed the result to be 98% specific with this degree of certainty that hips reaching a MP ≥ 46% would not spontaneously regress. CONCLUSION: These findings are clinically relevant in showing that it may be reasonable to continue to monitor hips with a MP not exceeding 46%. This threshold will also guide referral for further management of a displacing hip. Cite this article: Bone Joint J 2021;103-B(2):411-414.
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Parálisis Cerebral/complicaciones , Luxación de la Cadera/fisiopatología , Adolescente , Niño , Preescolar , Femenino , Estudios de Seguimiento , Luxación de la Cadera/diagnóstico por imagen , Luxación de la Cadera/etiología , Humanos , Masculino , Radiografía , Remisión Espontánea , Factores de Riesgo , Sensibilidad y EspecificidadRESUMEN
Streamflow duration information underpins many management decisions. However, hydrologic data are rarely available where needed. Rapid streamflow duration assessment methods (SDAMs) classify reaches based on indicators that are measured in a single brief visit. We evaluated a proposed framework for developing SDAMs to develop an SDAM for the Arid West United States that can classify reaches as perennial, intermittent, or ephemeral. We identified 41 candidate biological, geomorphological, and hydrological indicators of streamflow duration in a literature review, evaluated them for a number of desirable criteria (e.g., defensibility and consistency), and measured 21 of them at 89 reaches with known flow durations. We selected metrics for the SDAM based on their ability to discriminate among flow duration classes in analyses of variance, as well as their importance in a random forest model to predict streamflow duration. This approach resulted in a "beta" SDAM that uses five biological indicators. It could discriminate between ephemeral and non-ephemeral reaches with 81% accuracy, but only 56% accuracy when distinguishing 3 classes. A final method will be developed following expanded data collection. This Arid West study demonstrates the effectiveness of our approach and paves the way for more efficient development of scientifically informed SDAMs.
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AIMS: The purpose of this study was to compare the prevalence of hip displacement and dislocation in a total population of children with cerebral palsy (CP) in Scotland before and after the initiation of a hip surveillance programme. PATIENTS: A total of 2,155 children with CP are registered in the Cerebral Palsy Integrated Pathway Scotland (CPIPS) surveillance programme, which began in 2013. Physical examination and hip radiological data are collected according to nationally agreed protocols. METHODS: Age, Gross Motor Function Classification System (GMFCS) level, subtype of CP, migration percentage (MP), and details of hip surgery were analyzed for all children aged between two and 16 years taken from a time of census in March 2019 and compared to the same data from the initial registration of children in the CPIPS. Displacement of the hip was defined as a MP of between 40% and 99%, and dislocation as a MP of 100%. RESULTS: A total of 1,646 children were available for analysis at the time of the census and 1,171 at their first registration in CPIPS. The distribution of age, sex, and GMFCS levels were similar in the two groups. The prevalence of displacement and dislocation of the hip before surveillance began were 10% (117/1,171) and 2.5% (29/1,171) respectively, and at the time of the census were 4.5% (74/1,646) and 1.3% (21/1,646), respectively. Dislocation was only seen in GMFCS levels IV and V and displacement seen in 90.5% (67/74) of these levels and 9.5% (7/74) in levels I to III. In total, 138 children had undergone hip surgery during the study period. The hip redisplaced after the initial surgery in 15 children; seven of these had undergone a second procedure and at the time of the census the hips in all seven had a MP < 40. CONCLUSION: Hip surveillance appears to be effective and has reduced the prevalence of hip displacement by over half and dislocation almost by half in these children. Cite this article: Bone Joint J 2020;102-B(3):383-387.
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Parálisis Cerebral/complicaciones , Luxación de la Cadera/epidemiología , Articulación de la Cadera/diagnóstico por imagen , Vigilancia de la Población , Sistema de Registros , Adolescente , Niño , Preescolar , Femenino , Luxación de la Cadera/diagnóstico , Luxación de la Cadera/etiología , Humanos , Masculino , Prevalencia , Radiografía , Estudios Retrospectivos , Factores de Riesgo , Escocia/epidemiologíaRESUMEN
Biospecimens acquired during routine medical practice are the primary sources of molecular information about patients and their diseases that underlies precision medicine and translational research. In cancer care, molecular analysis of biospecimens is especially common because it often determines treatment choices and may be used to monitor therapy in real time. However, patient specimens are collected, handled, and processed according to routine clinical procedures during which they are subjected to factors that may alter their molecular quality and composition. Such artefactual alteration may skew data from molecular analyses, render analysis data uninterpretable, or even preclude analysis altogether if the integrity of a specimen is severely compromised. As a result, patient care and safety may be affected, and medical research dependent on patient samples may be compromised. Despite these issues, there is currently no requirement to control or record preanalytical variables in clinical practice with the single exception of breast cancer tissue handled according to the guideline jointly developed by the American Society of Clinical Oncology and College of American Pathologists (CAP) and enforced through the CAP Laboratory Accreditation Program. Recognizing the importance of molecular data derived from patient specimens, the CAP Personalized Healthcare Committee established the Preanalytics for Precision Medicine Project Team to develop a basic set of evidence-based recommendations for key preanalytics for tissue and blood specimens. If used for biospecimens from patients, these preanalytical recommendations would ensure the fitness of those specimens for molecular analysis and help to assure the quality and reliability of the analysis data.
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Laboratorios/normas , Neoplasias/patología , Patología/normas , Medicina de Precisión/normas , Acreditación , Investigación Biomédica , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , Fase Preanalítica/normas , Reproducibilidad de los Resultados , Sociedades Médicas , Estados UnidosRESUMEN
This laboratory study evaluates head shaft angle (HSA) reliability using ranges of simulated femoral orientation often seen in children with cerebral palsy. A dry femur was mounted in a jig that enabled the bone to be positioned in a range of internal and external rotation (-40° to + 40°) and flexion (0°-60°), alone or in combination. A metal wire was placed as a surrogate physis to give two HSA angles of 140° and 160°. Radiographs were taken of the femur in differing combinations of rotation, flexion and the two HSA angles. The HSA was measured by four independent observers on two separate occasions. Intraclass correlation coefficients (ICCs) were used to assess interobserver and intraobserver reliability. The HSA was accurately measured within ± 5° when the femur was positioned between 20° internal rotation and 40° external rotation. Flexion up to 60° did not affect the accuracy of the measurement. The interobserver reliability for the HSA was excellent with an ICC of 0.9970 [95% confidence interval (CI): 0.9995-0.9983] for the first measurement and 0.9988 for the second (95% CI: 0.9979-0.9993, all P < 0.01). The intraobserver reliability was also excellent with an ICC of not less than 0.990 for all four observers (95% CI: 0.9806-0.9986, all P < 0.01). There was excellent interobserver and intraobserver reliability when measuring the HSA in an experimental model provided femoral rotation lay within 20° internal and 40° external rotation and less than 60° of flexion.
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Cabeza Femoral/anatomía & histología , Cabeza Femoral/diagnóstico por imagen , Fémur/anatomía & histología , Fémur/diagnóstico por imagen , Parálisis Cerebral/fisiopatología , Niño , Humanos , Variaciones Dependientes del Observador , Ortopedia/normas , Radiografía , Rango del Movimiento Articular , Reproducibilidad de los Resultados , RotaciónRESUMEN
OBJECTIVE: This study aimed to determine the readability of commonly available patient information materials for pelvic floor disorders written in Spanish and compare their readability based on type of content and source. METHODS: Spanish patient information handouts, including pamphlets from the National Institutes of Health, International Urogynecology Association, American Congress of Obstetricians and Gynecologists, online printable handouts, and industry-sponsored brochures were assessed for readability. Online materials for patients were obtained from Google searches using key words (pelvic floor disorders, urogynecology, patient information handouts, Spanish). Reading difficulty was assessed using INFLESZ v1.0, (Barrio-Cantalejo IM, Spain) a free software developed to calculate the readability of Spanish written texts. Three index scales were used: Flesch-Szigriszt Index, Word correlation Index, and the Fernandez-Huerta Index. RESULTS: Forty patient information handouts were analyzed. All pamphlets analyzed had readability scores within the "average" to "very difficult" reading difficulty levels as per the index scales used. None of the analyzed pamphlets met the sixth grade reading level criteria suggested by the National Institutes of Health and American Medical Association, including government-developed materials. There were no differences in readability scores between type of leaflet content or source. CONCLUSIONS: Current available free, industry-, organization-, and government-provided reading materials in Spanish do not serve the Spanish-speaking only or low English-speaking literacy population. Future work should aim to simplify the language in such documents to the suggested sixth grade reading level.
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Comprensión , Lenguaje , Educación del Paciente como Asunto/normas , Trastornos del Suelo Pélvico , Femenino , Ginecología/educación , Alfabetización en Salud , Hispánicos o Latinos , Humanos , FolletosRESUMEN
BACKGROUND AND AIMS: Cerebral palsy is the commonest long-term physical disability in children with a prevalence of between 1.77 and 2.11/1000 live births. In 2013, the Cerebral Palsy Integrated Pathway Scotland (CPIPS) surveillance programme was introduced in all 14 Health Boards in Scotland and provides a standardised musculoskeletal examination of the spine and lower limbs. The purpose of this study was to report the prevalence, subtypes, motor classification and motor ability of children with cerebral palsy in Scotland. METHODS AND RESULTS: The family/carer's postal address, the child's neurological classification, motor subtypes, Gross Motor Functional Classification (GMFCS) Level and Functional Mobility Scale of 1972 children at first registration in CPIPS 2013-2018 were analysed. Their mean age at first assessment was 7.6 years. There was an overall prevalence of cerebral palsy in Scotland of 2.02/1000. GMFCS levels and Functional Mobility Scale data and prevalence were reported by Health Board and were comparable to that reported elsewhere. CONCLUSION: For the first time, data are available on the motor abilities of the total population of children with cerebral palsy in Scotland. This information will be highly relevant to resource management of current and future motor needs of these children.
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Parálisis Cerebral/epidemiología , Evaluación de la Discapacidad , Parálisis Cerebral/fisiopatología , Niño , Femenino , Humanos , Masculino , Actividad Motora , Prevalencia , Sistema de Registros , Escocia/epidemiología , Índice de Severidad de la EnfermedadRESUMEN
The College of American Pathologists (CAP) developed the Biorepository Accreditation Program (BAP) in 2012. This program integrates best practices from the International Society for Biological and Environmental Biorepositories, the National Cancer Institute, the Organisation for Economic Cooperation and Development, the Center for Medicare and Medicaid Services, and the CAP Laboratory Accreditation Program. The goal of this elective program is to provide requirements for standardization in biorepository processes that will result in high-quality specimens that can be used to support research, drug discovery, and personalized medicine. CAP uses a peer inspection model to ensure the inspectors have proper expertise and to promote educational efforts through information sharing. Lead inspectors are comprised of pathologists, PhDs, and managers of biorepositories and they are often supported by CAP staff inspectors. Accreditation is a 3-year continuous cycle of quality with a peer inspection occurring at the start of year 1 and a self-inspection and CAP desk assessment at the start of year 2 and 3. At this time 53 biorepositories are fully CAP BAP accredited and 13 are in the process of obtaining accreditation. There are currently 273 established standards with requirement lists customized based on the scope of activities performed by a biorepository. A total of 90 inspections were completed between May 2012 and December 2016. Sixty-one were initial inspections and 29 were reinspections. A total of 527 deficiencies were identified in the areas of Equipment/Instrumentation (22%), Information Technology (18%), Specimen Handling and QC (15%), Quality Management (16%), Personnel (11%), Safety (10%), Facilities (6%), and Regulatory (2%). Assessment of common deficiencies identifies areas of focus for continuous improvement and educational opportunities. Overall success of the program is high based on the current enrollment of 66 biorepositories, anecdotal participant feedback and increasing national recognition of the BAP in federal documents.
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Acreditación/normas , Bancos de Muestras Biológicas/organización & administración , Bancos de Muestras Biológicas/normas , Humanos , Difusión de la Información , Patólogos , Control de Calidad , Sociedades Médicas , Estados UnidosRESUMEN
Transition from paediatric to adult health-care services has been characterized as being poorly planned and coordinated, resulting in a reduction in services and may be distressing for families. This study aimed to establish what provisions are currently available in Scotland for transition of young people with cerebral palsy and what some clinicians believe future provisions should involve. Semi-structured interviews were conducted with 13 community paediatricians (or equivalents in health boards without community paediatricians) from 12 different Scottish health boards. Interviews were audio recorded, transcribed and analysed thematically using framework analysis. Both current transition provision and the areas that the clinicians felt needed improvement varied greatly between health boards. Key areas in need of improvement were coordination and communication within health services and also between health services and educational, social services and adult health services to which young people were transitioning. Transition remains problematic and variable. For transition to be improved, further research is needed to explore the effect this variation is having on young people and their families.
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Parálisis Cerebral/terapia , Necesidades y Demandas de Servicios de Salud , Transición a la Atención de Adultos , Adolescente , Adulto , Niño , Comunicación , Humanos , Escocia , Adulto JovenRESUMEN
CONTEXT: Biospecimens must have appropriate clinical annotation (data) to ensure optimal quality for both patient care and research. Additional clinical preanalytic variables are the focus of this continuing study. OBJECTIVE: To complete the identification of the essential preanalytic variables (data fields) that can, and in some instances should, be attached to every collected biospecimen by adding the additional specific variables for clinical chemistry and microbiology to our original 170 variables. DESIGN: The College of American Pathologists Diagnostic Intelligence and Health Information Technology Committee sponsored a second Biorepository Working Group to complete the list of preanalytic variables for annotating biospecimens. Members of the second Biorepository Working Group are experts in clinical pathology and microbiology. Additional preanalytic area-specific variables were identified and ranked along with definitions and potential negative impacts if the variable is not attached to the biospecimen. The draft manuscript was reviewed by additional national and international stakeholders. RESULTS: Four additional required preanalytic variables were identified specifically for clinical chemistry and microbiology biospecimens that can be used as a guide for site-specific implementation into patient care and research biorepository processes. CONCLUSIONS: In our collective experience, selecting which of the many preanalytic variables to attach to any specific set of biospecimens used for patient care and/or research is often difficult. The additional ranked list should be of practical benefit when selecting preanalytic variables for a given biospecimen collection.
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Manejo de Especímenes/normas , Bancos de Muestras Biológicas/normas , Bancos de Muestras Biológicas/estadística & datos numéricos , Humanos , Patología Clínica/normas , Patología Clínica/estadística & datos numéricos , Control de Calidad , Sociedades Médicas , Manejo de Especímenes/estadística & datos numéricos , Estados UnidosRESUMEN
BACKGROUND: Migration percentage (MP) is an accepted method of assessing lateral displacement of the femoral head in children with cerebral palsy (CP). Difficulty in positioning of patients for pelvic radiography remains a concern for the reliability of the MP. METHODS: This 2-part quantitative study examined 100 anteroposterior pelvic radiographs for children with CP. Fifty were from a region that had a positioning protocol for hip surveillance of children with CP and 50 images were from a region without. Images were assessed for acceptability of position in relation to hip abduction/adduction and/or pelvic rotation.Ten images deemed Acceptable or Borderline from the region with no protocol were then randomly selected. MP was measured on 2 separate occasions by 5 children's orthopaedic surgeons and statistically analyzed for intrarater and interrater reliability. RESULTS: There was no statistically significant difference in the acceptability of images between the 2 regions with 60% to 66% of the images meeting the criteria outright. When allowances were made for slight variation of abduction/adduction within 5 degrees, 74% to 80% of the images were acceptable.Reliability was variable with limits of agreement between 4.96% and 15.15%. Observers more familiar with the software measuring package had higher reliability within and between occasions. Variability within and between observers decreased as MP increased. CONCLUSIONS: Poor positioning did not appear to be the main reason for the variation in reliability of MP. Repeat measurements were reliable although standardized technique, training, and familiarity with software measuring programmes did influence outcomes.
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Parálisis Cerebral/diagnóstico por imagen , Luxación de la Cadera/diagnóstico por imagen , Articulación de la Cadera/diagnóstico por imagen , Posicionamiento del Paciente , Adolescente , Parálisis Cerebral/complicaciones , Niño , Preescolar , Femenino , Luxación de la Cadera/etiología , Humanos , Masculino , Radiografía , Reproducibilidad de los ResultadosRESUMEN
CONTEXT: Biospecimens must have appropriate clinical annotation (data) to ensure optimal quality for both patient care and research. Clinical preanalytic variables are the focus of this study. OBJECTIVE: To define the essential preanalytic variables (data fields) that should be attached to every collected biospecimen and to provide a complete list of such variables, along with their relative importance, which can vary, depending on downstream use, institutional needs, and information technology capabilities. DESIGN: The College of American Pathologists Diagnostic Intelligence and Health Information Technology Committee sponsored a Biorepository Working Group to develop a ranked list of the preanalytic variables for annotating biospecimens. Members of the working group were experts in anatomic, clinical, and molecular pathology; biobanking; medical informatics; and accreditation. Several members had experience with federal government programs, such as the National Cancer Institute's Biospecimens and Biorepository Branch and the National Cancer Institute's Community Cancer Center Program. Potential preanalytic variables were identified and ranked along with available supporting evidence, definitions, and potential negative effects if the variable was not attached to the biospecimen. Additional national and international stakeholders reviewed the draft manuscript. RESULTS: The ranked listing of 170 preanalytic variables produced can be used as a guide for site-specific implementation into patient care and/or research biorepository processes. Conclusions.-In our collective experience, it is often difficult to choose which of the many preanalytic variables to attach to any specific set of biospecimens used for patient care and/or research. The provided ranked list should aid in the selection of preanalytic variables for a given biospecimen collection.
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Bancos de Muestras Biológicas/normas , Comités Consultivos , Bancos de Muestras Biológicas/estadística & datos numéricos , Humanos , Patología/normas , Patología/estadística & datos numéricos , Sociedades Médicas , Estados UnidosRESUMEN
The 1st Puerto Rico Biobanking Workshop took place on August 20st, 2014 in the Auditorium of the Comprehensive Cancer Center of the University of Puerto Rico, Medical Sciences Campus in San Juan Puerto Rico. The program for this 1-day, live workshop included lectures by three biobanking experts, followed by presentations from existing biobanks in Puerto Rico and audience discussion. The need for increasing biobanking expertise in Puerto Rico stems from the fact that Hispanics in general are underrepresented in the biobanks in existence in the US, which limits the research conducted specifically to understand the molecular differences in cancer cells compared to other better studied populations. In turn, this lack of information impairs the development of better diagnostic and therapeutic approaches for our population. Dr. James Robb, M.D., F.C.A.P., consulting pathologist to the National Cancer Institute (NCI) and the Office of Biorepositories and Biospecimen Research (OBBR), opened the workshop with a discussion on the basic aspects of the science of biobanking (e.g., what is a biobank; its goals and objectives; protocols and procedures) in his talk addressing the importance of banking tissues for advancing biomedical research. Next, Dr. Gustavo Stefanoff, from the Cancer Institutes Network of Latin America (RINC by its name in Spanish), explained the mission, objectives, and structure of the Network of Latin-American and Caribbean Biobanks (REBLAC by its name in Spanish), which despite limited resources and many challenges, currently accrue high quality human tissue specimens and data to support cancer research in the region. Dr. Robert Hunter-Mellado, Professor of Internal Medicine, Universidad Central del Caribe, followed with an examination of the ethical and regulatory aspects of biobanking tissues for future research, including informed consent of subjects; protection of human subjects rights; and balancing risks and benefit ratios. In the afternoon, the directors of existing biobanks in Puerto Rico (the Puerto Rico Biobank, the Comprehensive Cancer Center biobank, and an HIV-focused biobank at Universidad Central del Caribe) presented their experiences and challenges with establishing biobanks for research in Puerto Rico. In sum, this workshop presented opportunities to share knowledge in the science of biobanking, for further training, and of networking among the participants (34 from 4 different institutions), which will strengthen the collaborative links between investigators studying cancer in Latin America, the Caribbean, and the US.
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Bancos de Muestras Biológicas/organización & administración , Investigación Biomédica/métodos , Congresos como Asunto , Neoplasias/diagnóstico , Humanos , Puerto RicoRESUMEN
Pathologists have long served as custodians of human biospecimens collected for diagnostic purposes. Rapid advancements in diagnostic technologies require that pathologists change their practices to optimize patient care. The proper handling of biospecimens creates opportunities for pathologists to improve their diagnoses while assessing prognosis and treatment. In addition, the growing need for high-quality biorepositories represents an opportunity for community pathologists to strengthen their role within the health care team, ensuring that clinical care is not compromised while facilitating research. This article provides a resource to community pathologists learning how to create high-quality biorepositories and participating in emerging opportunities in the biorepository field. While a variety of topics are covered to provide breadth of information, the intent is to facilitate a level of understanding that permits community pathologists to make more informed choices in identifying how best their skills and practice may be augmented to address developments in this field.
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Patología , Calidad de la Atención de Salud/normas , Manejo de Especímenes/normas , Medicina Comunitaria/normas , Humanos , Patología/métodos , Patología/normas , Medicina de PrecisiónRESUMEN
The aim of this study was to assess the repeatability of an observational gait analysis score that was developed specifically for unilateral amputees. Ten videotaped sequences were analysed by six experienced observers on two separate occasions. Data were analysed using percentage agreement, the kappa statistic and the coefficient of repeatability. The score demonstrated good intraobserver repeatability with an average repeatability coefficient of 3 (range 1.5-4.6). Interobserver repeatability was poor with a repeatability coefficient of 5.9. This score could be used in practice to assess amputees and is most repeatable if used by the same observer to evaluate changes in patients over time.
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Amputados , Miembros Artificiales , Marcha/fisiología , Extremidad Inferior/fisiopatología , Variaciones Dependientes del Observador , Adulto , Femenino , Humanos , Masculino , Reproducibilidad de los Resultados , Grabación de Cinta de VideoRESUMEN
UNLABELLED: Bizarre parosteal osteochondromatous proliferations (BPOP), also known as Nora's lesions, are rare tumors occurring most commonly in the hands and feet. They are benign and rarely exhibit radiological evidence of cortical invasion. We report a case of BPOP showing atypical magnetic resonance imaging features that are inconsistent with BPOP and having a novel chromosomal aberration. We also review the BPOP cases in our regional benign bone tumor database. LEVEL OF CLINICAL EVIDENCE: 4.